• Mission
  • Activities
  • Member meeting NL
  • Family day
  • Children's website
Mission

CMTC OVM Mission

"Our activities are aimed at the well-being of people who suffer from vascular malformations like CMTC ('Van Lohuizen syndrome') and to stimulate the scientific research of these afflictions."

CMTC Efteling 20090613 007

CMTC activities

An example of the many activities which we are performing. With special thanks to Mark Knopfler (Dire Straits) for allowing the use of his music.

Member Meeting NL

Member meeting NL 2015

Our global member meeting was held on the 14th of November 2015 in the Netherlands.
A total of 126 people from 10 countries was present.

Read more

Family day 2015 (Efteling)

On Saturday the 27th of June we organised the Dutch CMTC-OVM family day again! This year we had chosen the Efteling!
It was perfect in all aspects!

Read more

jezz

Youth Education Rare Diseases

This is a special website for children in the age around 10-15 years. Here you can travel through a number of worlds together with Amy and Max!

 

Register as member

On Saturday the 12th of November 2016 we are organising our annual global member meeting in the Netherlands. We welcome our foreign guests on Friday evening around 20 hours with drinks and snacks to get acquainted. The program on saturday contains various interesting lectures by (inter)national speakers. For the children there is entertainment in a special room next to the conference rooms. On Saturday evening we are organising a typical pancake dinner in an old farm for our foreign guests and volunteers

This year another European patient organisation will use conference rooms next to ours: the organisation for Lymphangiomatosis & Gorham’s disease (More information). The common medical issue is lymph problems. They are organising their own sessions and they participate in lunch and dinner.

 

Diagnosis

On the 11th and 12th of November we offer the possibility for a medical diagnosis. You can choose between a simple (free) diagnosis or a comprehensive medical diagnosis. You can register (before 1 November) via the registration form for the Member meeting (bottom of this page).

Simple diagnosis

On Saturday the 12th of November we offer a free medical diagnosis in a separate room for privacy reasons. We advise to have an annual check in order to monitor the patient more closely.

Comprehensive diagnosis

On Friday the 11th of November we offer our members a comprehensive medical diagnosis in the Academic Hospital in Rotterdam. This diagnosis is not free of charge.

More information

 

Location Member meeting

Hotel Leusden (van der Valk)
Philipsstraat 18
3833 LC Leusden
Link to website Hotel

Especially for our foreign guests we have negotiated last minute hotel room prices. These prices are per room and including an excellent breakfast buffet.The last minute hotel room prices are:

  1. One person room including breakfast € 74,50 per night.
  2. Two person room including breakfast € 89 per night.
  3. Three person room including breakfast € 113,50 per night.
  4. Four person room including breakfast € 138 per night.

Tourist tax will be added to these prices.

 

Programme Member meeting

Below you find the Draft agenda of Saturday the 12th of November (we have invited a number of presenters and we are waiting for their responses).
All sessions will be presented as much as possible in both Dutch as well as English.
We will be recording a much as possible sessions on video to enable members whom have not been at the conference to view the sessions. These videos are only accessible by members and doctors.

 

Time   Presenter
  Subject
09:00 - 09:30   -   Registration
09:30 - 09:45   Lex & Aaike van Oord   Welcome
09:45 - 10:30   Lex   Organization information
09:45 - 11:00   Prof. Dr. Jochen Roessler   Lymphangiomatosis & Gorham’s Disease
10:30 - 11:00   Erwan Berjonneau (Eurordis)   Rare barometer voices
11:00 - 11:30   Ami Hataya   Camouflage tips
11:30 - 12:30    Dr. Peter de Laat (parallel 1) 
  WEVAR: from past to present. Blood vessel abnormalities
11:30 - 12:30    Dr. Cees Smit (parallel 2)    The power of the patient
11:30 - 12:30    Drs. Jos van Erp (parallel 3)
  Workshop Stress Management
12:30 - 14:00    -   Lunch and networking
14:00 - 15:00    Dr. Wouter van der Schaar (parallel 4)
  Workshop selfimage and selftrust in visual difference
14:00 - 15:00    Dr. Maaike Vreeburg (parallel 5)
  Genetics anno 2016: with research searching for new questions
14:00 - 15:00    Prof. Dr. Leo Schulze-Kool  (parallel 6)
  Dr. Peggy Manders
  Biobank lymphatic tissue samples; what can patients do?
15:00 - 15:15   -   To parallel sessions
15:15 - 16:15   Dr. Hester Langeveld (parallel 7)   Blood and lymph vessel issues
15:15 - 16:15   Dirk & Jule Exner (parallel 8)   Meeting German speaking persons
15:15 - 16:15   Ben Cornelissen (parallel 9)   Active yoga
16:30 - 16:45    Lex & Aaike van Oord   Closure
16:45 - 18:00   -   At parking lot fresh and warm stroopwafels!
13:00 - 16:30   Dr. Peter de Laat c.s.
  Medical diagnosis
16:45 - 17:30    -   Snacks and drinks
18:30 - 20:00    -   Dinner with foreign guests and volunteers

 

Beware: the maximum amount of medical diagnosis is not known at this stage. Being added or not to the list depends on the sequence of conference registration via the website.

Subcategories

Member Meeting USA

Overview of the member meetings in America

Click on a link to read an account of the corresponding member meeting.

Member Meeting NL

Overview of Member meetings in the Netherlands

Click on a link to read a report of the corresponding member meeting.

jezz

Upcoming Events

Oct
18

1010:1010 18-10-2019 - 1111:1010 23-10-2019

Nov
1

0808:1111 01-11-2019 - 1010:1111 02-11-2019

Nov
9

0505:1111 09-11-2019 - 0505:1111 14-11-2019

Twitter

CMTC-OVM @raredisorders Fully agree! However, this is not only in Canada. This is at least the same average in Europe. We ne… https://t.co/HNBqFI7ro3
About 6 hours ago
CMTC-OVM We have arrived in Washington DC for the NORD conference. In case you want to have a meeting with us, please send… https://t.co/epIO1IM6Fz
About 8 hours ago
CMTC-OVM We provide personal support where we can such as last weekend near San Francisco. @RareDiseases @Eurordis… https://t.co/ASvD9HBNiK
Thursday, 17 October 2019 22:51